{"id":17409,"date":"2026-07-15T10:31:50","date_gmt":"2026-07-15T10:31:50","guid":{"rendered":"https:\/\/mecfs-research.org\/?p=17409"},"modified":"2026-07-15T10:34:23","modified_gmt":"2026-07-15T10:34:23","slug":"news-ndpe-patient-involvement","status":"publish","type":"post","link":"https:\/\/mecfs-research.org\/en\/news-ndpe-patient-involvement\/","title":{"rendered":"'National Decade Against Post-Infectious Diseases': The German research ministry has set up a patient participation scheme"},"content":{"rendered":"

We are supplementing our previous reports on\u00a0the progress of the implementation of the National Decade against Post-Infectious Diseases<\/a><\/span> and our commentary on the first funding guidelines for the \u201cNational Decade\u201d<\/span><\/a>\u00a0with an update on the current status of patient involvement in the \u201cNational Decade\u201d committees.\u00a0<\/strong><\/strong><\/strong><\/strong><\/p>\n\n\n\n

With the launch of the National Decade against Post-Infectious Diseases on 30 January 2026, a steering group was set up by the Federal Ministry for Research, Technology and Space (BMFTR) to provide further coordination. The patients\u2019 perspective is represented on the steering group by the German Society for ME\/CFS (Deutsche Gesellschaft f\u00fcr ME\/CFS) and BAG Selbsthilfe. <\/p>\n\n\n\n

Three working groups were since set up, focusing on the following topics: 1. Translation (covering treatment development, among others), 2. Data and biosamples (research structures) and 3. care-related research. An overview of the activities, plans and objectives to date is provided in the presentation given by\u00a0Prof. Dr. Natascha Sommer on the National Decade and the post-COVID research landscape<\/span><\/a>\u00a0at the ME\/CFS Symposium 2026.<\/p>\n\n\n\n

Many organisations representing those affected have campaigned for strong patient involvement in the committees of the National Decade. In each of the three working groups, two representatives will now bring the perspective of those affected to the table. A total of six organisations are represented:\u00a0<\/p>\n\n\n\n

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  1. Working group on translation<\/strong>: Fatigatio e. V. Bundesverband ME\/CFS\u00a0e.V.\u00a0& NichtGenesen Kids e.V.<\/li>\n\n\n\n
  2. Working group on data and biosamples<\/strong>: Deutsche Gesellschaft f\u00fcr ME\/CFS e. V.\u00a0\u00a0& ME\/CFS Research Foundation<\/li>\n\n\n\n
  3. Working group on care-related research<\/strong>:\u00a0\u00a0Long COVID Deutschland\u00a0\u00a0& Elterninitiative f\u00fcr ME\/CFS-kranke Kinder und Jugendliche e. V.<\/li>\n<\/ol>\n\n\n\n

    Responsibility for communicating the content of the \u201cNational Decade\u201d lies with the initiator, namely the BMFTR.<\/p>\n\n\n\n

    The participating organisations are fully committed to ensuring that the \"National Decade\" will be consistently patient-centred and that research funding is used effectively. The participating organisations have each appointed suitable patient representatives\/experts with a group perspective and specific expertise for the committees. In doing so, they see themselves as advocates for all forms of the diseases, including ME\/CFS of any cause, post-COVID syndrome and post-vaccination syndrome.<\/p>\n\n\n\n

    In addition to the direct representation on committees mentioned above, the BMFTR has announced further formats for dialogue with other patient organisations (see our\u00a0report on the BMFTR\u2019s first virtual exchange with 16 patient organisations and initiatives on 9 June<\/span><\/a>).\u00a0<\/p>\n\n\n\n

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    How can you support the work of the ME\/CFS Research Foundation?<\/h3>\n\n\n\n

    While progress has been made, there is still a long way to go before diagnosis, care and treatment of ME\/CFS patients will one day become an established medical and social standard. We at the ME\/CFS Research Foundation are focussing on biomedical research, which we see as a key element in solving these problems (more on this in our research funding strategy<\/a><\/span> and in the recent half year report<\/a><\/span>, which summarises our activities). To achieve this, we rely on broad support from private donors \u2013 those affected, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. If you are not able to provide direct support, you can share our stories and motivate others to help. Because only together can we achieve. this goal.<\/p>\n\n\n\n

    We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. improved ME\/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!<\/p>\n\n\n\n

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